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Vornongoreg
When doctors told me that my second baby was a "bum baby" who "would never walk, talk, sit up, or be a person" and that I should just "give her up to foster care or an institution" because "having a baby like that will ruin your family financially and emotionally until you cry dry tears" we stopped listening to doctors. We told ourselves they weren't fortune tellers. This baby held our hands with her tiny fingers curled around our pinkies -- and her clear green eyes tracked our eyes. She was ours and we were keeping her. I dreamed and hoped and worked 24/7/365 so that she would live. I hardly slept for five years. I figured if I gave it all my best try for five years, I could relax afterwards. I could not let her die on my watch. But she couldn't breathe. She was trached. This tracheotomy took away her voice. All I could hear was her breathing through a tube in her chest/neck junction. It required a suction machine to keep her airway clear for four years, day and night. She was at constant risk of aspiration with or without the trach. Fifteen minutes after she was trached, a social worker asked me, "How are you feeling?" I told her to get away from me and told the hospital through the PICU Director that if any social worker speaks to me again while my child was hospitalized, I was going to sue the hospital for intentional infliction of emotional distress. I hated everything medical that interfered with her life. The doctors were amazingly hateful and dense. I separated 'her' from 'the medical needs' and in my mind, she was not going to be a patient for one second longer than she needed to. That is, she would live her life around feedings through a feeding pump into a tube implanted in her belly; she would live her life around respiratory inhalation therapy; she would live her life around pounding her little lungs to remove the secretions that caused them to collapse from pneumonia every other month -- She had an older brother. Her eyes sparkled every time she saw him. I raised my two by handing her to him when she was first born, saying to him as he held the little bundle she was -- "This is your baby sister, and you are her Big Brother. You can teach her everything she wants to know. She will listen to you before she listens to anyone else. She is yours to protect and love." Those were my exact words. He got a soft and loving look on his almost 3 year-old face that I will never forget; and it is still there: his children will be lucky, too. The doctor who first trached her refused to see us unless we made appointments weeks in advance -- even when there was an emergency with her trach; she had begun to outgrow it and it was interfering with her swallowing, causing her to aspirate her saliva and causing too many pneumonias. She was four years old. I went to UCLA School of Medicine (this was before the internet) and did a lot of research. I found an article by a doctor (Dr. Michael Nash) who discovered that trach tubes cause swallowing problems in adults by changing the angle of Os.1 I figured they would cause worse problems in kids because of their smaller anatomical proportionalities. So I got some great doctors to assess the situation. And we got her trach removed. The insurance payments started lagging. It was more than 'only' money. The nurses who came at night to monitor her had to be paid. More legal battles. My next dream was to hear her sing. She sang at her 'graduation' from PreK/preschool. The director at first refused to let her attend without a medical aide even when her trach was removed and all she had left was a plugged g-tube. It took legal action to allow her to attend without an aide which we felt would be stigmatizing to her at that point; she was getting better but still had multiple pneumonias and collapsed lungs. My next dream was to see her learn to read. It happened. And her incidents of pneumonias began to diminish; she was down to two or three a year by the time she was in middle school. My next dream was to see her graduate from high school with friends who valued her and loved her. It happened. My next dream was to see her graduate from college. It happened. My next dream was that she would grow into a woman who is capable, independent, loving and beloved, enjoying her life, and passionate about her interests. I dreamed she would know the joys of life. She does. It took our lifetimes and every ounce of willpower and mothering and lawyering and fathering and brothering effort for these goals to be reached. She has inspired all of us, and is fun, funny, smart, insightful, capable, -- I could go on and on! How does it feel? As though I have climbed a treacherous mountain. As though I am sitting on the top, looking at the astonishing and beautiful views of a 360 degree world as huge gusts of wind blow my hair back, cooling me after the climb -- seeing the fullness of life at my age now, as if for the first time. Sometimes I'm fearful a big wind will come and blow me back down the wrong way. But I'm here. The view's magnificent. She's more than fine. Life can really be beautiful. ---- 1 Nash, M. Swallowing Problems in the Tracheostomized Patient: Otolaryngologic Clinics of North America, 21 (4): 701-9, (1988)